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The Medical Merry-Go-Round

When I had my second child in July, I was excited to get home and start our life as a family of four. Instead we began a costly, stressful medical journey.

For the first week she was kept under a blue light, and later a light blanket due to jaundice, so when she didn’t breastfeed right away we figured she was just tired. Each of her jaundice tests required the heels of her feet to be sliced open, and for her blood to be squeezed into a vile. By the end both of her heels were covered in bandages. No wonder she was exhausted.

But then time passed and she still wouldn’t nurse well. Cue lactation consultant one, who was lovely. She visited us in the hospital and at home, but nothing improved much after the visits. We went to another consultant, who checked for a tongue tie, didn’t see one, and referred us to a speech language pathologist for help with feeding. She also checked for a tongue tie and didn’t see one.

Our little girl kept falling asleep during feedings (she was bottle fed at this point, since trying to nurse wore her out even more). Her tummy rocketed up and down while she was trying to get milk. We wondered if the little milk she was able to get was worth the energy she was expending.

She went through what’s called a swallow study. It’s where a baby is made to swallow barium while their throats are x-rayed to see if they are aspirating. My husband and I were taken into a very white room, given lead gowns to wear, and told to keep her very still on a wedge pillow during the study. A massive machine hummed above my baby while three people ran around saying things I could barely understand.

They determined that she wasn’t aspirating fluid, but her suck to swallow ratio was way off. Instead of swallowing after each suck, she swallowed after every seven sucks. This was dangerous, but we didn’t know the cause.

She was still very tired in general, so we went to Cardiology. We were given an appointment for the next day. Everyone knows that if you get seen by a specialist that soon it’s not good. The feeling of seeing her tiny body on a huge table covered in tubes was surreal. I could hear myself breathing, as if my ears were plugged.

They said her heart was normal. I could have screamed for joy, but I didn’t want to scare her.

The Ear, Nose and Throat doctor assured me there was no way she had a tongue tie. 100% no chance. He put a tiny tube up her nose and down her throat. He said he got an excellent picture. She didn’t have reflux. He estimated she was more premature than we thought (37 weeks gestation isn’t normally considered premature, but in her case maybe it was somehow) and that she would outgrow her problems soon and start breastfeeding in the next few weeks.

That did not happen. I tried two different nipple shields. I tried breastfeeding outside. I tried every position. I had breastfed my son for a year. I knew something was wrong.

I started analyzing all of her movements. Was she jerking around? She kept arching her back. Why was she shaking her head? I wondered if her problems were neurological. I sort of knew I was overanalyzing, because she was meeting her milestones, but I needed to confirm that.

A physical therapist found that she had torticollis, and we started therapy and chiropractic work to help her stretch her neck muscles. This issue prevents her from having a full range of neck movement, and probably happened due to how she was positioned in the womb.

We couldn’t rule out brain problems, so we were sent down to Phoenix to the neurologist around the same time our feeding therapist said it might be time to have the tongue tie guy down there take a look, just to be safe. This was five months in.

The neurologist said she didn’t see anything outside the range of typical baby behavior, but she recommended we put her under anesthesia and do an MRI anyway. Plus an EEG. Because “why not.” After all, something was causing the feeding problems.

The very next day we saw the tongue tie specialist who found that she had a tongue tie in less than 10 seconds. The procedure was done in another two minutes. She also had a lip tie, but we decided to only do one procedure and see if that helped.

After five months of wondering if she would face lifelong challenges, and several doctors confirming that they didn’t see a tongue tie, she started to get better! After her tongue release her feedings improved. We were able to determine that was the cause of her feeding troubles and cancel the MRI. We are going to do the lip release as well, but at least there is a light at the end of the tunnel!!

Here are a few takeaways from my 5 month experience on the medical merry-go-round.

1. Listen to your gut and advocate for your child.
2. Get a second, third, or fourth opinion.
3. Rule out simple problems first.
4. Know that your lovely, well-meaning, wonderful doctors are just people doing their best. They might not get everything right.
5. Torticollis and tongue ties go together frequently! If you see one, check for the other.
6. The research about post tongue-stretches shows that they don’t do much to actually prevent reattachment. I barely did them and we had almost no reattachment. I know people who did them religiously who had to have a “revision,” or second release.
7. No face is perfectly symmetrical. No head is perfectly round. All babies are beautiful.
8. Give thanks for the healthy children in your life. Every day your child is healthy is a huge, huge blessing.
9. Give thanks for amazing friends and family who support you. Wow! I had a friend visit all the way from Kentucky to help me. Who does that?
10. You don’t know until you know. It’s so easy to go down rabbit holes or get caught up diagnosing things on the internet. It’s hard to stay present and just look at the facts you have. But even if you’ve been to more appointments than you can count, you might just have to keep waiting. If you are waiting, mama I feel you! Big hugs.

One Response to The Medical Merry-Go-Round

  1. Danika Danker
    Danika Danker February 12, 2020 at 11:20 pm #

    We had a similar, yet less medically intense experience here in Flagstaff (also starting with dehydration that they thought was jaundice and torticollis and nursing aversion). No one here can diagnose tongue ties like in Phoenix. Unfortunately, we thought our tie had been fixed in Flag (after I diagnosed it off a meme I found online and had it clipped here) and didn’t go down til Phoenix until 5 months old after baby kept losing percentiles and it cost us our nursing journey 🙁

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